Friday, February 8

Blogging life

Another blogging momma (RK; Braska Bear) has put questions on her website that I would love to write about because I believe in blogging!

What has the DS blog community meant to you? What lessons have you learned? How did they encourage you? What are some of your favorite stories?

First of all we need to go back almost two years. Colin and I learned that Tommy might have Down syndrome during week 20 of our pregnancy. At that point I started to educate myself about what Down syndrome meant. How we could raise this baby. Much of that education was found on the internet thru the blogs that people maintained. I learned what Ds meant to families.

Fast forward to after he was born and the blogs continued to help us. We have had one of the "worse first year of life" that a kiddo with Down syndrome can have (if you are in the running for this award currently, let me know because I would LOVE to share with you some of what has kept us going). Hirschsprung's Disease added ontop really was tough. Add to that the AV canal repair in the heart. Tommy (and us) have spent 1/3 of his life in the hospital. We became very isolated that year and the blogging community was our only connection for many dreary hospital stays. I'm happy to say that Tommy and Liam are now 14 months old and much of the 'fight for life' is over. We have fought soooo hard for this guy! And when I read blogs (daily) from other families I understand that many of us are in similar medical situations and it helps me know that our family is not alone.

I find that most of the emotional support we receive comes from people posting thoughts, advice, comments on our blog and others. It's not so much the blogs themselves but often times the conversations that they start.

One site in particular, Braska Bear, is a little girl whom we would never have met under other circumstances (distance between us is a biggie). But having the blogs and noticing how similar she was to Tommy has been a wonderful source of information and knowledge. The conversations that her mom starts about medical care for Braska are wonderful and I read the comments from other dads and moms.

Closer to home, the blogs of Cooper, Dylan, and Max give me everyday inspiration, ideas, and the sense that my emotions (and ANY emotions) are okay. Those blogs encourage me and my husband to keep on keepin' on!

And talk about similarities in blogs, the Shamptons and the Wegs both have twins with one gorgeous kiddo having Ds. Both of their twins are older than ours and give us a window to a life in the future.

My favorite stories are of my own kids and the ability to go back thru our blog and see where we have been, how scarey some days were, how joyous (absolute miracles) other days were, and the pictures! Other stories that I enjoy are the hilarious ones on blogs..... Max not going to sleep, the Gillig poopy stories or dog w/skunk combo, and the Howards videos of Cooper dancing.

The beauty of blogging is if you don't feel like writing for a week, don't. If you feel like writing five times in one day, do it. If you are so sad and want a pick me up, look for some funny stories.

Tommy Adventures